Key decision-makers in England have upheld an appeal by the TSA and others to rethink whether or not to approve funding for fenfluramine, a medicine that some people with TSC could benefit from
The National Institute for Health Care and Excellence (NICE) decides whether approved medicines should be funded for use by NHS England. They originally said ‘No’ to funding fenfluramine for Lennox-Gestaut Syndrome (LGS), a complex and very difficult to treat form of epilepsy that some people with TSC also have. However, thanks to a combined effort from the TSA, SUDEP Action and UK Rare Epilepsies Together, the NICE panel have agreed to rethink their decision.
The TSA is pleased that NICE are taking another look at whether to fund fenfluramine or not as the medicine offers another vital treatment option for people with Lennox-Gastaut Syndrome, including many in the TSC community.
“We’re very thankful to the TSC families involved in the hearing, as well as the excellent partnership we’ve developed with SUDEP Action and UK Rare Epilepsies Together.”
As part of our appeal, Dr Pooja Takhar (Joint Chief Executive) spoke passionately to the NICE committee about the impact that access to this medicine could have on some people with TSC. During the appeal we were also proud to have four families from the TSC community, who also have a diagnosis of Lennox-Gestaut Syndrome, describing the life-changing diagnosis of TSC-associated LGS.
Pooja commented on the decision: “It’s very encouraging to see that NICE, a world-leader in funding important medicines, has acknowledged the need to look again at whether or not to fund fenfluramine. We’re very thankful to the TSC families involved in the hearing, as well as the excellent partnership we’ve developed with SUDEP Action and UK Rare Epilepsies Together.”
Reasons that the appeal was upheld included the panel’s finding that it was unreasonable to compare treatment of fenfluramine against existing standards of care, as these standards are not reflected in actual, real-life practice.
The TSA will continue to work hard with NICE and partner organisations like SUDEP Action and UKRET to push for a positive decision to fund fenfluramine for LGS. As with all next steps in TSC care, we’re here to push to get the TSC community what you deserve.
